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Category: Empathy

I do not go into the handicapped bathroom stall anymore, unless it’s an emergency and it’s the only one available. The reason is simple: what if my mother needed it? Or somebody else in a wheelchair or motorized scooter? I’ve seen a selfie taken of a girl who used the bathroom with the door open because she uses a wheelchair, with a man WALKING out of the handicapped stall nearby. But, taking care of my mother who uses the motorized scooter to go out to eat, I can’t think of going to a place without considerable disruption. The issue is this: The scooter, when put together, is three feet long by twenty inches wide, by three feet high. We chose a scooter which can be taken apart so we can drive a reasonably sized car and put it in the trunk. Anyway, there is considerable disruption with using a motorized scooter when we go out to eat.

First, we have to make sure we can get in the door. First, is there a step or a ramp? Then, can we fit in the door? And then the second door? This is not an easy task, especially here in Kentucky, where we can encounter one door, with a small hallway, and a second door, even before we can get into the actual restaurant. What if the second door faces a different direction than the first door? That eliminates most Waffle House locations, and especially our local one, which is the only one less than twenty miles away. I haven’t been to a Waffle House in three years due to logistics complications. We try to get to as many locations as we can, though. We try not to complain.

Then, there is the seating. We usually have to use a table, which I do not mind, but when they remove a seat for my mom to sit at said table, they usually have to be told to remove a second seat. Do you know how embarrassing it is to ask for what you need, especially when you have people looking around at you with disdain? Sometimes, you have to remove the seats yourself. It’s usually easier that way, though. That way, you don’t feel like you’re being a pain.

After the seating debacle, we can order food and eat, but then comes the restroom visit. Keep in mind, my mother’s motorized scooter is twenty inches wide. Most restaurant restrooms barely have enough room for her to get to the handicapped restroom, let alone in the stall. And what if the handicapped stall is being used? She has to get off the scooter, with some difficulty, and let it potentially block the other stalls to use a regular stall. As you can see, most of the time, my mother waits until she can get home to use the restroom.

I try not to complain too much. Sometimes, though, I can see a clear injustice in poor logistics planning, especially around the disabled. Living with somebody that uses a scooter or wheelchair kind of opens your mind.

There is a disconnect between what most people think Autism Acceptance is and what it really is. Most people think Autism Acceptance is letting the person flounder around aimlessly in life and let them waste their time on earth. That is simply not true. You work around autism, not destroy it, not let it rule you. If you could imagine, for a moment, a person that lacks the ability to walk. Do you let them drag themselves around on the street? No! You get them a wheelchair or other walking aid. Accepting autistic people as they are does not mean leaving them to flounder in their pain. It means you teach them how to function in the world obviously not made for them.
I’m not entirely against training the autistic child on how to function in this world. What I am against is the lack of explanation that this is how to function in the world. Explaining that this is how to function kind of sounds like this:
“Cami, this is how most people function in the world. By talking and using words.”
“Cami, I need you to use your words.”
“Cami, that is inappropriate. Please talk about something else.”(*Cami was my childhood nick name. I might as well put my name in.)
The point is, if the child does not know what you are doing, how are they going to get on board?
I’m also not entirely against the concept of accommodations and adjustments for the autistic, either. Another fallacy in the way society treats the autistic is that they treat it the way they treat mental illness, or any other invisible illness. Would you tell a person with a broken arm or leg that they need to “do better,” or “get out of your funk”? Would you tell someone with the flu they need to try harder to get well? Of course not. Just because a stim makes you uncomfortable does not mean it needs to stop. Does the autistic yell at you to stop talking, for example? No. They know it comforts you to hear your own voice. Why not give that same compassion to them?

What can I say about the legacy of Martin Luther King Jr.? How he championed nonviolence? How his struggles for the black people and others spurs my own civil rights struggle? (Yes, as an autistic, and a woman, I struggle for love, acceptance and civil rights.) Yes, I can say a lot about Dr. Martin Luther King Jr. And his legacy, but I feel that others can do it much better than I can. So I will let them.

As I see it, the State of the Autistic is, well, poor. We have a long way to go. Let’s start with the obvious:

The average life expectancy of the autistic person is 54 years old, even though autism should not affect life expectancy directly. (By contrast, neurotypical lifespan are roughly 80 years in the USA.)

With other diagnoses, such as epilepsy, life expectancy lowers to 39, even though autism should not directly affect life expectancy. (Again, life expectancy is roughly 80 years for most neurotypical people.)

Many of these people are murdered and raped by their caregiving families.

Autistic voices are routinely ignored, just as much, if not more, than female voices.

Almost every autistic woman I know has been raped, molested and/or abused, myself included.

Almost everyone I know with autism has either no job or a low-paying job.

I myself am on disability payments to live and take care of my mother with.

This is a bleak picture which I do not see changing, because nobody will listen to autistic adults. Autistic adults are often treated like they do not exist, even by parents of autistic children. If they can, they are expected to be neurotypical. If not, they are locked away in institutions. How is this fair to autistic people?

After a day of rest, I have enough energy to talk about how I dealt with Christmas.

I don’t really have any more tips, other than know your autistic relative.

Christmas Eve was basically spending an evening at my cousin’s place for food, family and fun. The funny thing is, it was almost entirely about vegetable casseroles, almost all of which I like very much. Off topic, it’s funny how I have come to like vegetables as an adult, even after thinking I would never like them as a child. Somehow, trying new things and culinary adventure came to include veggies in adulthood. Sometimes, one just needs to bite the bullet and try it. There’s no shortcuts to that one. We also got games, good family talking and even some quiet times, too. It was great. I was disappointed in one factor, though; I wanted to talk to the parents of an autistic relative of mine. He’s a young boy, but I would like to have a talk with his parents, you know, to provide some perspective. But they were not there. I was not exactly going to grill them or provide lectures, but it helps when you’re not alone in a family, as I have so often felt.

Christmas Day was a little different. We invited a couple who had just gotten together, but the man in the two was a friend, so it was alright. Much of the food was on my shoulders, but it was very easy. We had Prime Rib, steamed vegetables, rice pilaf, rolls and a salad, plus cheesecake for dessert. It’s not easy to screw up Prime Rib. Twenty minutes at a high temperature and then 25 minutes per pound. It was done within three hours, resting included. That was the hardest part of the meal. I mean, rice pilaf is very easy from the boxes, and I’ve done rolls many times for Thanksgiving. So, easy meal, good food, good friends, and an overall nice time. It started to get very cold when the day was done, so we had to get them home early. We had a nice time, with blocks of quiet book ending the day. Could not have asked for more.

There was a sketch on “Robot Chicken” some years ago depicting the various FCC dodges on the Battlestar Galactica remake. It was made pretty obvious that the characters were swearing their guts out with alternative swear words, but the punchline was the FCC censor’s reaction: “What the [BEEP] were they talking about?” Yeah, it’s funny. It also made me feel for the FCC censor. I’ll tell you why.

It took me until late in middle school to understand most idioms. Idioms, for those who don’t know, are general sayings that mean something else. For an autistic, that can be confusing. It’s just about as confusing as the dialogue on the new Battlestar Galactica. But the teacher of my advanced English class decided to teach us about idioms – and the explanations of popular idioms at the time. I struggle with the idioms of the younger generations, but once somebody tells me what they’re talking about, I can understand, and even better, use it well. Take, for example, “riding dirty.” There’s a song which uses this idiom over and over, but never tells you what it means. It means having drugs in the car. I don’t know if they use it anymore, but it’s an example. Yes, I’m showing my age, but at least I try to understand younger adults and what they’re saying.

I’m not complaining about something random for no reason. I’m saying that an autistic person can get something as confusing as idioms, if you take the time to teach them.

What else can I say about Holiday décor and bustle? Here are a few tips I have picked up along the way:

Keep It Simple. You may have to avoid things like putting up a tree until they can handle it better, or ever, but keep the decorations simple. I know that by looking at my house, you may not see this tip in place, but it is there. We have picked a simple color scheme and stuck to it.

Tradition, Please. Now, I’m pretty sure that whatever level you have the decorations and bustle at, be sure that all the traditional elements will be noticed. This one is better kept in my arena. All the decorations I have up are tradition – a fancy word for Christmas Routine. We put up the tree, put out the Nativity (we’re Christian), decorate the main areas of the house, and it’s all now routine to me.

Keep. The. Routine. The Christmas Tradition is all a routine you keep, stretched out over a time span of about a month, depending on your holidays. Now, I’m going to talk about routine a little more, because it’s a comfort for us autistic people. The upset routine is upsetting. To us autistic people, it’s like saying sheep have wool, but it somehow seems to get lost on non-autistic people. It’s like a child who has naps about midday not having his midday nap. We get cranky and upset.

Have a Refuge Ready. A refuge from all the hustle and bustle is necessary, and has been advocated as a must by autistic advocates since the early days of Temple Grandin. I’m sure my mother finds it weird that I barely talk while we’re in the car going somewhere, even without music. The thing is, it’s a refuge that is portable. Perhaps we autistic people, or our caretakers, need to seek out a refuge for the person, just in case they need to, say, relax the senses for a while.

Try to Empathize. Yeah, yeah, I know the stereotype. Autistic people aren’t supposed to be able to empathize – that is dead wrong. It’s been my experience that non-autistic people lack the empathy unless they actively practice it. Think about it – imagine you are at a loud concert, in front of a throbbing speaker, and imagine that all the time – you may begin to be able to empathize as to what we go through. I beg of you, try to think of what we go through. We’re trying to communicate it. Listen.